Week 21: Rediscovering some unused muscles

Another good recovery week, with a clinic visit to confirm that I am on track. While I have not quite ‘graduated’ to the long-term (‘survivors’) clinic, one more regular clinic visit in two weeks and I should be done.

In chatting with the haematologist, he was not worried about some of the symptoms I am living with (lower energy, burbling stomach and more moderate appetite). On the first, he simply noted the need to monitor it (always the case in allo stem cell transplants), on the latter, given my weight remains stable, not a major issue.

As he was the haematologist most strongly advocating scans, we reviewed the question of scans and he is relaxed, again given that my treatment was ‘steered’ through stopping my immunosuppressants. Once when I see again the head of the clinic, I will have a process discussion, as it is still not clear to me how and who made the decisions, and I am curious even if pleased with the result.

I will start to be revaccinated next month and in good news, he agreed no sense to keep my Hickman line in, but noting wryly, ‘if we have trouble, we blame the Hickman, or if we have trouble, we blame taking it out too early’. However, as am at the 5 month mark and that the Hickman has not been used for almost 4 months, the time has come.

So a good boring visit!

Movie-wise, over the holidays we risked going out to see Tintin (Spielberg fun) and The Artist (enjoyable and beautifully filmed nostalgia to the era of silent film). A few videos as well: Midnight in Paris (pure enjoyment), Recount (reliving the 2000 election with great depiction of the ‘back room boys’ – and they were mainly ‘boys’), and the 1953 version of Julius Caesar with John Geilgud and Marlon Brando.

I have also started reading again, with the delightful The Cat’s Table by Michael Ondaatje. Like all his books, beautifully written, interesting characters, and wonderful weaving together of their lives.

And I started cross-country skiing again. Funny that every time I restart something, there is a fair amount of fear, like I was starting again from scratch. While I fell or almost fell a lot the first day, I felt a lot more stable the second, so it does come back. But all those muscles working together to keep one’s balance take time to get back in sync, and needless to say, I feel them for a few days afterwards.

And recalling the message of the clinic nurse who said I will know if I am pushing myself too hard it I can’t get out of bed the day after, I have noticed an additional hour of sleep required. All good, as pushing myself but not too much (2 hours or more I would start to worry!).

The house will be quieter with the end of the holidays, our son back at university, our daughter back at school. Weather permitting, hope to cross-country ski most days to balance the walks (and nicer than the indoor bike) although unlikely to try skating again this year – the balance thing.

So it looks like I am on the straight stretch of the roller coaster and hope to keep it that way.



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